First off, I appreciate anyone who offers their time to read thru my frustration. I am finally at my wits end and want to leave mainstream medicine because these people are talking thru places that weren't meant for speech.
I am a 53 yo woman (and ususally quite nice, most people like me) whose had, not once but twice, a multi level cervical laminectomy with revision surgery in 2001 and again revision surgery and fusion in 2006. Today I still suffer the same symptoms. My neck flat out hurts. My head feels like it weighs 30# and it's getting harder and harder to hold it up. Sometimes I will wear my hard collar just to support my head when I'm very tired or the weather is very bad. My right arm has developed a mind of it's own and frequently hasd it's own agenda - spasms I guess you call them. But most of all, it's this incessent burning that is breaking my mind and spirit. My arms from the elbow to shoulder caps burn and all around the back of my neck burn. When I shower, I feel like I'm standing an acid rain bath. No - this description is as accurate as I can make it - not for drama.
My surgeon sent me for an emg - then decided I should have those "shots" which did no good and the doc that does them said no more go back to the surgeon. So, now, ok, we do more exrays - oh, broken screws at T1. Two screws have fractured inside of the vertibrae body or walls.... ummmph. My arms are sore as hell, my strength is down to almost zero in my right (dominant) arm --- I had a CT scan. So, now, after a series of C-spine MRI's. a CT scan, nerve conduction test and standard exrays - FIVE different doctors have said there is severe stenosis and impingement at C5, 6 7 and T1-2. Oh yes, a neuro confirmed FMS...that was diagnosed by my original surgeon as "alodynia" for phantom pain with no source. He left the area in a hurry 6 years ago. Gee, I wonder why.
Anyway - I had a recheck with my surgeon this week who was very busy and sent his PA in to see me.... umph.... I'll tell you what he said to me, but you have to sit down.... He (the PA) said there is NOTHING wrong with my spine, no stenosis, no impingements, yada yada, BUT, there is rotator cuff damage and a cortizone shot will fix me right up.... What the .... heck!!!!! This rotator cuff thing came from left field. Nobody even looked at my shoulder before he even said this...I showed him all the reports I've been collecting from all these tests, which include pictures and research I've done on my own - he blinked at me... "where'd you get all that?" Never mind that, I asked, how can you tell me I'm fine when all the doctors you referred me too have a very different opinion?
I don't know where to turn or who else to see. My skin burns so badly when I rub it, it feels itchy - then I scratch - bad mistake!!!! Sometimes, there are the tiniest of bumps on the surface that bleed if I do give in to scratching - but to just look at these arms - there is no visible rash, the bumps are easier felt than seen.
I recently took myself off neurontin (gabapentine) 2700 mg a day! And I have to admit, even though I was on them for 7 years, and think I have been permanently dumbed down by them - they worked. I have to give in and go back on them. But not 2700 mg's again.
Oh, also, I have been complaining that I choke a lot. I have to sleep on a -U- shaped pillow, because ANY pressure on my throat makes me gag (this includes collars and jewelry). They sent me to the ENT for that, and since he couldn't find anything wrong, he figured I should live the rest of my life on acid reflux medicine.... OMG! I don't have acid reflux, I have scarring from anterior cervical surgery and my throat's messed up. Why can we figure this out and they can't? .
I know I'm not alone with this....Any thoughts? And, again, thank you for sharing your time with me.
I am fed up with this medical system too. They guess at what's wrong. Have you had an emg? Are you losing muscle? What was your surgery for in the first place and did the burning start after. Where you on neurontin before your symptoms started with the heavy head and the swallowing issues? Are you having twitches? I have been sick for 2 1/2 years and for the last six months I have just given up on neurologists because they all have different answers and they frankly do not know what to do when someone does not fit in the box of the norm. I understand your frustration completely.
Thanks for writing.
It is difficult to give an opinion without clinical exam. However from your post it does seem to me that you do have neck issues and not just the torn rotator cuff. Loss of strength and burning pain in the arm is very suggestive of nerve impingement.
Some of your symptoms could also be because of fibromyalgia. FMS can cause sensitivity to touch and pain. You can opt for alternate therapy or complementary medicine like Acupuncture.
As far as neck issues are concerned I am afraid but you will need to seek another opinion on this with an experienced neurologist in your area. Good luck!
Thank you DrNoopurMD and myooshki. I appreciate your patience reading my epistle. Myooshki, I had neck and arm pain and muscle weakness and saw a dr who sent me for my first MRI - from there to a neurologist that was in the throws of a class action lawsuit and was never aware till it was too late. That was when I had my first laminectomy. The arm pain started immediately after surgery. The damage was so severe post op I had no ability to move my hands or arms for weeks. I was on high doses of morphine and oxycontin (I can't imagine anyone wanting that garbage for recreation - it was awful and I became fully addicted while in the hospital and rehab hospital). I started taking neurontin about 5 months after that surgery in 2001.
In '06 I had a sudden onset of the same symptoms - had another emg and was escorted to my current spine surgeon. Within 2 weeks in was back in the hospital This time, I was fused. Nobody could believe that a dr would do such extensive surgery without stabilizing my neck, my diagnosis at that time was acute kyphosis. I looked like a goose with my neck hanging out....the surgery was performed over two days posterier and anterior this time with the rods and screws. I never complained about my shoulder. But I'm sick to death of the way I'm being treated.
And yes, I twitch like crazy and my balance is bad and I fall a lot.
I plan to meet with the dr that did my emg and get copies of his latest reports and ask him for ideas to alternate docs to see and get a referral from my pcp to see the alternative medicine folks in the city! Or a Shaman or a Medicine Man .... No joke, I think they are so spiritually sound they have more on the ball than modern medicine folks.
I guess my question should be "Why are we treated this way by our physicians?????" We go for help and they are nice enough, but when you really challenge them - they become ambivolent.....that's a crime.
I'm sorry you have to put up with all this nonsense.
In reading over your symptoms, I wonder if your burning pain is neuropathy.
You said you have twitching.
If you look up the symptoms for magnesium deficiency, you'll recognize some of yours.
Taking magnesium supplements should help reduce the muscle twitching and some of the pain.
There is a book, "Pain Free 1-2-3" written by Dr. Jacob Teitelbaum.
This book has some excellent suggestions for treating pain, many of which you can do yourself.
Dr. Teitelbaum also has the book notes on his website, endfatigue.
I make many of my own tinctures at home. For instance I use white clover and cinnamon for colds and flu, turmeric for arthiritis, wild yam for my hot flashes and my Husband's BP and diabetes. I also use valerian root at bedtime so I can sleep. (wild yam and turmeric are high in magneseium) I tried rx after rx to sleep and the valerian is a God send -- no more rx's for sleeping!
I will ask my pcp about this at my next appointment tho and see what she thinks. I admit, I have put more stock in these threads than I do in any of providers right now tho. But an IM injection may do the trick! Thank you so much for your thoughts and suggestion.
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